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Undiagnosed Autoimmune with back pain, spasms, and stiffness
Autoimmune Diseases | Last Active: Nov 14, 2021 | Replies (91)Comment receiving replies
Good morning @aeg73 . Sounds like you have really been thru the wringer! I, too, had some of your symptoms and others, also. After begging, they finally did an MRI which showed demylinization of parts of my brain. I have Clippers disease, a rare autoimmune disease. The local doctors didn’t really know how to proceed so my husband took me to the university medical school and hospital. By then I had lost 20 pounds, couldn’t walk or talk, and was essentially unresponsive. It’s been a long road but I guess I’m as good as I’ll ever be. Thanks to steroids and rituxan ( a monoclonal antibody) . Have you thought about going to Mayo Clinic or another large medical/university center? I really wish you luck! Becky
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Hi @becsbuddy Thank you for your info. Sounds like your experience was incredibly scary. I have regained some weight back and don't have any weakness or gait issues so I fortunately do not think it's MS so at this point I'm going for more specific Lyme testing before getting any brain scans. I also don't want contrast scan because of the chemicals. I have MTHFR & some other genetic stuff that doesn't do well with chemicals so I don't want to add insult to injury. I did have a spinal x ray due to the musculoskeletal pains but that did not show any spinal lesions. From what I've read and heard Mayo isn't great with Lyme. So at this point I don't think it's warranted but appreciate your info. I hope your treatment has improved your quality of life. Kindly, Amy